• I have a rather dark question for you to consider

    Asked by BobbyZ on Monday, November 25, 2019

    I have a rather dark question for you to consider

    I am going on hospice and I assume I will slowly go downhill. One of my kids wants to come stay with me and take care of me until the end. I told her I didn't want her staying with me until the end and seeing all of the horror. I want her to remember me as I am now. Still able to take care of myself, use the restroom by myself, cook, etc. But I know that's going to change. I saw both of my parents right up to the day they died and I don't want my kids to remember me that way. What do you think? Have you known of anyone that did this?

    Thanks for your input.

    13 Answers from the Community

    13 answers
    • Created07's Avatar
      Created07

      I was with my mother until she passed with lung cancer. I wouldn't take anything for the chance we had to sit up at night and just talk. Was it hard, absolutely! Did I wish it could have been anything in the world but having to lose her slowly the way she went? Of course! That being said, it gave me such an opportunity to care for her the way she had always cared for me. I held her on the toilet, cleaned her bottom, fed her, bathed her, gave her medicine, etc. But I Was There! Sometimes we would talk, sometimes we would just be quiet, but I Was There. I needed that. I've watched her as her little chest would lie still for what seemed like forever and not known how to pray. Do I ask God take her quietly out of her misery, or do I ask to keep her just one more day? There are no words to describe how hard it is. And it is an individual thing. What was good for us may not be good for everyone. As for me, it was a gift so precious. In the middle of the night, in the middle of the hardest thing, the hardest time either of us had ever gone through, something beautiful was born. I wouldn't take anything in the world for closeness that came out of the experience. I hope God is very gentle with you and yours

      4 months ago
    • po18guy's Avatar
      po18guy

      It is not your abilities or physical appearance. This time is a test of love. The love you gave during the course of your life is now being repaid. Although we never want to be a burden, love sees no burden.

      4 months ago
    • GregP_WN's Avatar
      GregP_WN

      I can understand your not wanting them to remember you in your hour of pain and death. But, I took care of my Mom and Dad both who were in hospice care. It was hard for sure, but one of the most rewarding things we have ever done. My wife, my two brothers and a sister, and their spouses took care of them until the last breath. It's a thing that not many people get the opportunity to do, but it was rewarding for us. We learned more about them in that last 6 months than the rest of my life. Give them a chance, they will want to sit and talk and soak it in. You will like having them taking care of you in this time of role reversal.

      4 months ago
    • Carool's Avatar
      Carool

      My mother died in the hospital, not in hospice, and I didn’t take care of her before her final hospital stay (my father did). I did see her deteriorate physically and even somewhat mentally (emotionally). Seeing her at her worst did not mean that I think of her at her worst. Although she and I had a difficult relationship, I remember her as who she was (or my memories of who she was) throughout my life, not the way she was at the end of her life (she died of pancreatic cancer). I wish you peace.

      4 months ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      Everyone has already stated all that I was ready to write . I helped care for my dad for months before his passing and came to know him so much better than simply as a daughter. I helped care for my younger brother when he went into hospice and it was a very bonding experience for us both . I was fourteen years his senior and so spent little time with him all through his childhood and into adulthood, but we really grew so close those final months and I know nothing between us was left unsaid. If you decline your child’s presence during hospice care, I think both of you will be emotionally poorer for it .

      4 months ago
    • elissa5's Avatar
      elissa5

      My siblings and I took care of my Dad. It was difficult during that transition. The memories i have is laughing about trying to hold his cigarette so he could smoke, making banana pancakes in the middle of the night, and talking like we never did before. The memories are the good times not how he looked at the end. We got closer than we ever were. He knows he was loved to his very last breath. I am very happy he allowed us the honor of caring for him.

      4 months ago
    • macfightsback's Avatar
      macfightsback

      I believe it was a great comfort to my father when we cared for him at his home as his health declined. (He had end stage COPD). My Dad told us he wanted to go back to the hospital and we said no when he went on Hospice. The Hospice nurse came to his house instead. I am a retired registered nurse who worked primarily in ICU. I have seen many people pass away. It was difficult for me the day he died because it is always hard to see someone we love leave us. Everyone dies in their own way, often as how they lived. I have never regretted being beside my Dad when he died. There is something special about being with your loved one when they. leave us. It made my sister and I feel better, giving back to our father some of the love and care he had given us over the years. It is much more comforting to you and your family to be in the comfortable familiar surroundings of your home than in an institution. He was awake, alert, feeding himself and walking with help up until a few hours before he died. I would have been happy to do more care if he had needed it. You are so blessed that your family wants to care for you. It will.be an opportunity for you to become even closer. As for memories, I remember the good times like fishing with him.

      4 months ago
    • TerriL's Avatar
      TerriL

      I was with my mom until the end. Although I remember her death, I wouldn't have wanted it any other way. I still remember the good times we had. Don't deprive your child of this chance to be with you.

      4 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Hi BobbyZ. I'm sorry that it has now come to you having to go on Hospice. That's got to be a difficult decision. It is very unselfish of you to want to spare your kids seeing you as your health declines, but if you were my family, I would also consider it somewhat selfish - I would WANT to be there for you, regardless of what kind of shape you were in. I would resent being told to stay away.

      I had a friend who was dying of lung cancer. He was in the hospital a lot of the time. (He only lived about a month after diagnosis so his decline was rapid) At any rate, he and his family made some funny memories during that time - memories that I am quite sure still bring a smile to their face, despite the fact that their dad was living his final days and wasn't the virile man he had been only a few short weeks earlier. I guarantee you they would not trade having to see him decline for those moments.

      Good luck, BobbyZ. Please stay in touch for as long as you're able.

      4 months ago
    • meyati's Avatar
      meyati

      Talk to your family-
      I have some questions about your opinions of being closer together. Are your children-grandchildren-etc mentally or emotionally fragile? My son is a 100% disabled vet that takes about $3,000 worth of pills a month--these are for pain, depression, and lots of other things. The VA regularly provides suicide counseling and groups for him. People suffer from mental issues and their families don't really know how bad it is. For his credit, my son said that he wanted me to stay home and he'd take care of me.

      What about my grandsons? They don't have the money or resources to stay home and care for me. So, does anybody have the money to stay with you? Are they physically fit to lift you up etc?

      I was my father's main care taker-I just turned 13 when he passed. I cooked his foods, fed him, watched him cry. My brother and I took him to the potty. We washed him down. I rubbed him daily with rubbing alcohol to keep him from having bedsores. I sprinkled his sheets with baby powder to keep him from getting bedsores. I massaged him.

      I have the opposite opinion of the rest of you--Maybe it depends on the type of cancer. The cancer I had becomes a group and drills down through the bones, and it releases an acid like sulfuric acid. No type of pain killer works, With the current laws and regs, I'm not sure my HMO Advantage plan would even try to help me.

      They would eat through my brain like PAC MAN, until they damaged the brain stem or some gland.
      Nothing kills the pain. Several oncologists told me that people scream and scream with this.

      I had abcesses in both ears when I was 17. My doctors did the paperwork for me to attend the California School for the Deaf in Sacramento, CA. I screamed so loud and often that the neighbors called the police. I learned to place pillows over my head and scream into them. That was when doctors made home visits. Every day the police and the doctor checked on me. They were waiting for me to lose my voice. Somehow a miracle happened, and I can hear.

      There wasn't anyway that I wanted my family to be in the same house. I upset the medical powers that be, because I refused to stay home and put my family through that. I told them they were trained and paid by the government to take care of me in a hospice building.

      4 months ago
    • meyati's Avatar
      meyati

      I should add that when administration was pushing "Home Hospice", I told them about my so9n's condition-depressed, suicidal, goes into the mental ward at least once a year, which is much better than being in the VA mental ward over 50% of the year. He scared himself.

      My radiologist, my primary care of that time, and the chaplain interceded for me and my family that I would go to the Pres hospice, not stay at home. I asked them what would happen if my son had a breakdown and entered the VA for even a week or he committed suicide, At that time, none of the grandsons were staying with us. Seriously-- one was a guest at Florence Super Max for various federal crimes. If he would be out anytime that I needed hospice, would a civilized society want him caring for me? He scares me, he steals everything, he tries to bring friends over that aren't so nice- they all are violent.

      So I'm wondering if BobbyZ is also being pressured by his medical care takers, as I was being pressured? There can be many factors in our lives that we really don't care to disclose, we make some lame excuses to hide our embarrassment and shame..

      4 months ago
    • cards7up's Avatar
      cards7up

      All of those memories will be there in the end. We might remember the passing for a time but the good and loving memories always override what happened in the end. Love does that! Nothing can change that relationship ever!!!

      4 months ago
    • kalindria's Avatar
      kalindria

      I think it should be your choice.

      4 months ago

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